Today is PDA (Pathological Demand Avoidance) Day and I wanted to do a quick post to promote awareness and provide reassurance to all those families who are supporting children and young people with the condition.
As we know autism can turn parenting on its head. You need to relearn everything you ever thought you knew about how to be an effective parent. Add PDA into the mix and it’s one more new ball game – except it isn’t always fun. Not for you and not for your young person.
What I want to share with you today is that you are doing a fantastic job. You are doing the best you can, with the best resource you have – yourself!
When it all disintegrates and your child or young person refuses to clean their teeth (because you asked in the wrong way) or eat what you have cooked (because it tastes like rubbish – I get told that one) or put their shoes on, go to school – whatever the everyday request is that you have asked....
Give. Yourself. A. Break!
It isn’t personal. It might feel like it but it isn’t (most of the time anyway).
Remember the times when these same scenarios have worked out and went well. Ask yourself what worked then? How was I feeling?
The one thing I have come to understand is that my son with PDA is extremely good at sensing mood and emotion in other people – very insightful indeed and this can very quickly cause him to be upset if he senses I am tired or upset, hurt, frustrated or anxious. He might not know what the difficult emotion is, but he does sense that it is present in the room. It is this that can then send him over the edge, and, he very quickly becomes the emotion that I might be feeling myself. Cue meltdown!
What has often seemed like tiny requests to me evolve into huge perceived demands and everything implodes.
It can be like living with a human smoke alarm – constantly primed and aware of impending danger, ready to alert everyone to the perceived danger – even if only the toast has been burnt!
Pick your battles
It is time to pick your battles. Does it really matter? Do you really need to leave the house or get dressed or clean teeth? It isn’t about successful parenting at this point, but emotional wellbeing and survival.
So today I am thinking of all you families living with PDA in one capacity or another. Take a moment and remember how well you are doing and how far you have come.
Happy (I hope) PDA Day!
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Thank you. You are so right, sort out their emotional wellbeing and everything else will follow in time.
Thank you. Yes I believe it will. It’s definitely pick your battles and deciding on the ones that are worth it for everyone!
Great post. It’s easy to brush over how much we do to keep life ticking along as PDA parents – and also easy to forget how difficult life would be for our children if we weren’t helping them so much. Happy PDA Day to you too! 🙂
Thanks Steph. Its a constant two steps ahead situation and a good sense of humour. Otherwise I think we may have crumbled here. It’s ought to come with a parenting degree!
Thank you for your post Angela, and for everyone’s comments. Really needed to hear this week that even when it feels like four steps backwards, it’s part of the process and we’re still doing OK.
I’m glad you note your son’s extremely sensitive to mood and emotion in others. The assumption seems to be that those with high-functioning autism are by necessity poor at picking up on others’ mood and emotions. I keep having to explain that in fact my son’s also excruciatingly sensitive in all his interactions with other people.
Like many parents, in February I had to go private to get the PDA diagnosis, as CAMHS famously “don’t recognise” PDA.
Since then I’ve been struggling to get them to acknowledge he’s even on the autism spectrum. In addition, the consultant paediatrician also diagnosed combined-type ADHD. However, last week CAMHS clarified (finally) that no, they don’t accept that diagnosis either, in spite of its being based on feedback from around 15 teachers and school staff, and an area the consultant paediatrician specialises in. They’re now saying they would have to re-assess him themselves, which (of course) would not happen for many many months.
My son’s almost 13, has been out of school and stuck, isolated at home since last October, having already missed out on most of the school year up to that point. He’s miserable, frustrated and lonely. I feel the right ADHD medication might help him very substantially – to be able to stay engaged on a task would enormously boost his self-esteem, and might motivate him to be able to leave the house more. Now it seems our only option is to try to find a way to pay for ongoing treatment privately. Any suggestions much appreciated!
Hi Kate – It is very area dependent as to whether PDA is diagnosed as you have found out. Because the condition is not listed in the DSMV there are very few if any NHS Trusts that can diagnose it, although some will recognise it as a range of symptoms. Sounds like your having a difficult battle with health and education. Have you been able to have the conversation with CAMHS about the evidence you have from private professionals and teachers? Would you go for a tertiary referral – Everyone is entitled to a second opinion and it might give you the support you need – What area are you? In Surrey for a tertiary referral you go via your GP or peadiatrician and have to evidence why you need it (provide as much as possible) as a result we got a referral to St Thomas which have been a great support – Otherwise yes it would probably be private support ou will need to get – I also work for an organisation that provides 121 anxiety support for young people ( http://www.positiveautismsupportandtraining.co.uk ) Is there something like that in your area?
Hi Angela, I’m so sorry for the delay replying to you after your kind response! I’m still relatively new to the site and couldn’t find the right page…
Yes, I’ve spoken to the CAMHS team about it repeatedly since February. All we can agree on is that my son experiences extreme levels of anxiety.
Regarding their rejection of the ADHD diagnosis, last week the CAMHS team clarified that from their point of view there are things they’d expect to find in the Consultant Paediatrician’s report “that are not there”. I passed that on verbatim to the Consultant Paediatrician and asked if she’d be willing to speak to the CAHMHS Child Psychiatrist by phone. She has replied there is little point (‘My experience of trying to do this before is that they get defensive and start citing criteria – although criteria are just part of how we should be diagnosing’) but has offered to send them copies of the school feedback she received.
Asking my GP for a tertiary referral might help as concerns ADHD re-assessment – I will try it – but with the DSMV situation it will achieve nothing unfortunately where PDA is concerned.
Thank you for the link, I’ll have a look.